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Creating a strong advocacy voice for preeclampsia in the halls of Congress and within the federal agencies is a multi-step process. Great strides were made in February toward achieving this goal.
Early each calendar year, congressional offices allow organizations to submit to them spending requests and directive language in relation to federal programs that addresses the following fiscal spending year. The congressional offices then review the requests and set their priorities. The Foundation through its advocacy efforts and work with an outside government relations firm is working to cultivate strong relationships with federal lawmakers to advance preeclampsia research and programs. The Foundation's DC representatives worked with Congresswoman Lucille Roybal-Allard (D-California), a champion on women's health issues and a representative with strong interest in preeclampsia research. At the Foundation's urging, the congresswoman has agreed to submit congressional language (called report language) on preeclampsia research. The language will be considered for inclusion as part of the Labor, Health and Human Services Appropriations legislation under the National Institutes of Health appropriations section of the bill. The following is the language to be submitted as supported by the Foundation:
“The Committee is concerned that not enough progress has been made in understanding the causes of and risks associated with preeclampsia and the related conditions of eclampsia and HELLP syndrome, which can result in disability or death for the mother, and premature delivery for an infant. The Committee encourages the institutes to work collaboratively to share research findings and facilitate additional research into ways to better prevent, manage and identify interventions for these conditions.”
The Foundation is also working toward developing strong ties with the Congressional Caucus for Women’s Issues and other members of Congress who have health care backgrounds or are supporters of maternal and child health issues. Last month, the Foundation worked with Congresswoman Lois Capps (D-California) and Congresswoman Roybal-Allard to have the members submit a letter to National Institutes of Health (NIH) Director Dr. Francis Collins, inquiring as to the current funding allocations at NIH for preeclampsia and other hypertensive disorders of pregnancy. Rep. Capps serves on the House Energy and Commerce Committee, which has jurisdiction over NIH programs and policies and Rep. Roybal-Allard serves on the House Appropriations Committee and health subcommittee, which has jurisdiction over NIH spending. Through this effort, the Foundation learned that over $17 million is currently being spent on preeclampsia research and that this research is conducted across nine institutes, ranging from institutes focused on child health to those focused on environmental health. The Foundation is now working to meet with representatives of the institutes to discuss this research and offer insight. A meeting is anticipated in April.
On January 2, 2013 I was 23 weeks pregnant with our first child and we just found out that we were... Read More